Dear Barbara and Kay,
I am consulting with a 24 year old primip patient in her 3rd trimester who has Sjogren’s Syndrome. She is wondering if it will affect breastfeeding. She was diagnosed 3 years ago and is being followed by a rheumatologist and a perinatologist. She describes her condition as “mild”, with her symptoms just affecting her eyes and saliva. Her only medication for this syndrome prior to becoming pregnant, was Restasis, which she is not using while pregnant. I am not familiar with this syndrome and when I search the internet, I don’t find much information about Sjogren’s syndrome in breastfeeding women.
Jo Lynn, RN, IBCLC
Barbara and Kay respond:
Sjogren’s syndrome is grouped in some of the texts with other autoimmune and connective tissue disorders such as lupus and rheumatoid arthritis. Some of these are linked in the literature with potential postpartum flare-ups, but breastfeeding is not contraindicated. I had a client some years back who had this condition and breastfeeding was not affected. However, there is so much variability in terms of the severity of all such syndromes, and when you add stress, fatigue, and postpartum hormone fluctuations, it can be difficult to generalize between cases.
Lawrence & Lawrence, in Breastfeeding: A guide for the medical profession (7th ed, 2011, pp 561, 580) include a brief mention of Sjogren’s. They write:
“Primary Sjogren’s syndrome, which involves the glands of secretion (sweat, salivary) is known to be associated with hyperprolactinemia, but because of the characteristic abnormalities of secreting glands, lactation may not be successful. Sjogren’s syndrome has also been seen in association with Raynaud phenomenon. Breastfeeding is not contraindicated.” (p 580)
On page 561 under hyperprolactinemia they state:
“If a woman has achieved pregnancy with hyperprolactinemia, postpartum lactation is possible.”
Revai, et al. discuss two cases of women who had Sjogren’s Syndrome at the time their babies were born. Both struggled with milk supply issues. Both were prescribed 200 mg of hydoxychloroquine, a mild anti-inflammatory medicine used in patients with autoimmune diseases. Both had improved milk supply within 2 weeks.
Revai K, Briars L, Cochran K. Case series of Sjogren’s syndrome and poor milk supply partially responsive to hydroxychloquine. Breastfeeding Medicine 2010; 5(1):332.
Hale, Medications and Mother’s Milk (14th ed, 2010, pg 276) lists Restasis as a category “L3” or “Moderately safe.” The AAP appears to have some concerns with regard to this medication during breastfeeding.
Hale notes that Restasis interacts with oral antifungals (such as fluconazole, etc) so be sure to warn her not to take oral “yeast” medications while also taking this drug. We advise you to get more information from the mother and suggest that she (and her doctors) call the Infant Risk Center (Dr. Hale’s wonderful phone service at the Texas Tech Health Science Center) to inquire about any new info on drugs and Sjogren’s Syndrome. That number is: 806-352-2519.
With regards to your role, simply be supportive with normal advice and adopt a watchful waiting stance. Checking in periodically during the first 2 weeks would be prudent in order to monitor her situation to determine if all expected events have occurred (milk coming in, normal volumes of milk, diaper outputs, etc.) Given the remark in Lawrence & Lawrence regarding Raynauds phenomenon, it would be useful to provide some anticipatory guidance on managing vasospasm. This would include: applications of dry heat and gentle massage of the nipple to improve blood flow during episodes of blanching, and lots of reassurance that the pain is annoying but not dangerous.
Just knowing that you are available to help her would be so encouraging and probably help this mother get past most issues. If it turns out that she has worsening symptoms, you can also be available to help her look at options.
As usual, we encourage LCs managing interesting or unusual cases to take some notes and consider writing them up in the form of a brief case report and submitting to places like the Journal of Clinical Lactation, which is focused on practical management aspects of breastfeeding.